The constant let down

Its going on a month now without an infusion pharmacy. But then again I’ve lost most of my concept of time, I’m on little to no sleep, and we’ve been to the ER at least 3 times a week.

Bella has been having the worse chest pain of her life. It radiates through to her back, and up her neck. Makes it hard for her to eat, and she’s been completely bed bound. There’s even been a few times she was litterally too sick to even make it to the ER. We know they cant help most of the time, but without her supplies, and without us having everything we need, it’s very hard to keep her stable. Every day has been beyond what we can handle, and it’s like none of the doctors care.

We’re trying our damndest to find a new pharmacy, it’s just not working out too well. However it’s also been fun at the ER. She went in for chest and stomach pain, found out she had a 3.6 cm cyst on her ovary that was noted to have blood and debris in it. They sent her home saying to see an OBGYN, who can’t see her til the end of the month…

Also they gave quite the scare, noting her aorta was mildly tortuous. With Bella having EDS and that never noted before, it could have ment something really bad, leading to an anurism, luckily the scan was just wrong, but that was a fun two days of trying to figure out what it meant and trying to get a follow up. Not what you want to hear when you’re in 10/10 pain in your chest and they say your main vein decided to twist, and no one seemed to mind…

Just yesterday at the ER she got a urine test, just like always. The test released in her mychart today, saying there were red/white blood cells, bacteria, and mucous. Calling back the ER doctor, he said to follow up with her PCM, because it could have just been a false or contaminated reading… Bella has pain in her abdomen, her private areas, and it’s known she has a cyst about the size of her ovary, on her ovary, but decided to ignore the test that came back as a possible UTI and they just said it’s probably an upper respitory infection, pulled chest wall muscles, and the pain from her cyst…

I honestly feel at this point the doctors are actively trying to do nothing at all. Like no matyer the situation, no matter the results, just tell her she’s ok, and to go home. While shes srill in pain. While she still doesn’t have the meds and supplies she needs. While it’s more than we can possibly handle on our own. It’s just always left to be up to us to figure everything out.

Because it’s chronic lyme, because it’s babesia, because it’s all these things we’ve gone more than out of our way to prove, and we have, but no one wants to try. No one wants to treat her, not one person is even willing to try. Not without traveling to an expensive out of pocket doctor. Not without having to pay for everything out of pocket.

How are we supposed to live? She’s barely hanging on by a thread, but since they don’t want to believe the only results explaining everything, we’re left with i don’t know, and i don’t know what the next steps are.

As i write this I’m just trying to stay conscious. Bella is in more pain than i could possibly imagine, and I’m just trying to keep her comfortable and out of the ER as long as I can.

From perfectly healthy, amazing woman, working 3 jobs, living her best life.. To beadbound, in constant pain, constant suffering, with her only relief being asleep, which doesn’t last long. We’re falling apart, and trying our best. We don’t know where to go from here unless we can see a doctor willing to take a shot on her treatment plan.

Im sorry, it’s just been a long, hard, stressful last couple of weeks. Im sure i didn’t cover everything, and i know ill have to update or add a new post after this to get it all in, but i gotta try to finish out tonight and possibly get more than an hour or two of sleep.

So please share, far and wide. Someone out there mighy have an answer or be able to offer help. For now i thank you for reading. If you’d like to donate to our see a doctor and pay for Bella’s meds funds, the links are at the top of the page. We’ll also love you forever. If not, that’s cool too, just glad people are reading and at least trying to understand.

Thanks for reading.


P.s. here’s savayah being cute, reading to her giant bear 🙂 isn’t she adorable?

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